Renal Response Outcomes of the EuroLupus and National Institutes of Health Cyclophosphamide Dosing Regimens in Childhood-Onset Proliferative Lupus Nephritis.

OBJECTIVE: We compared clinical characteristics and renal response in patients with childhood-onset proliferative lupus nephritis (LN) treated with the EuroLupus versus National Institutes of Health (NIH) cyclophosphamide (CYC) regimen. METHODS: A retrospective cohort study was conducted at 11 pediatric centers in North America that reported using both CYC regimens. Data were extracted from the electronic medical record at baseline and 3, 6, and 12 months after treatment initiation with CYC. To evaluate the adjusted association between CYC regimen (EuroLupus vs NIH) and renal response over time, generalized estimating equations with a logit link were used. An interaction between time and CYC regimen was included, and a contrast between CYC regimens at 12 months was used to evaluate the primary outcome. RESULTS: One hundred forty-five patients (58 EuroLupus, 87 NIH) were included. EuroLupus patients were on average older at the start of current CYC therapy, had longer disease duration, and more commonly had relapsed or refractory LN compared with the NIH group. After multivariable adjustment, there was no significant association between CYC regimen and achieving complete renal response at 12 months (odds ratio [OR] of response for the EuroLupus regimen, reference NIH regimen: 0.76; 95% confidence interval [CI] 0.29-1.98). There was also no significant association between CYC regimen and achieving at least a partial renal response at 12 months (OR 1.35, 95% CI 0.57-3.19). CONCLUSION: Our study failed to demonstrate a benefit of the NIH regimen over the EuroLupus CYC regimen in childhood-onset proliferative LN. However, future prospective outcome studies are needed.

Jargon Be Gone - Patient Preference in Doctor Communication.

While it has been shown that healthcare providers often use medical jargon, less is known about how patients prefer their clinicians communicate. This mixed-methods study aimed to better understand the general public's preference in healthcare communication. A volunteer cohort of 205 adult attendees at the 2021 Minnesota State Fair was presented a survey with two scenarios at a doctor's office sharing the same information: one using medical terminology and one using simpler, jargon-free language. Survey participants were asked which doctor they preferred, to describe each doctor, and to explain why they believe that doctors may use medical terminology. Common descriptive themes for the jargon-using doctor included that this doctor caused confusion, was too technical, and was uncaring, while the doctor who spoke without jargon was perceived as a good communicator, caring/empathetic, and approachable. Respondents perceived a range of reasons why doctors use jargon, from not recognizing they are using words that are not understood to trying to make themselves feel more important. Overall, 91% of survey respondents preferred the doctor who communicated without medical jargon.

Laypeople's (Mis)Understanding of Common Medical Acronyms.

OBJECTIVES: Abbreviations are often used in medicine yet may be a source of confusion for patients and their families. We aimed to determine the general public's understanding of commonly used medical acronyms. METHODS: For this cross-sectional study, we surveyed state fair visitors regarding their understanding of 5 common medical acronyms. An electronic survey was administered to a volunteer sample of adults who spoke and read English and who had never trained to work in medicine or nursing. Free-text responses were coded as correct, partially correct, or incorrect by 2 independent researchers, adding a third researcher if consensus was not reached. Analysis methods included descriptive statistics, Fisher exact tests, and multivariable logistic regression models. RESULTS: We recruited 204 volunteers (55% female; mean age 43 years; 67% had a bachelor's degree or higher). ED (emergency department) was correctly defined by 32%, PCP (primary care provider/physician) by 18%, CBC (complete blood count) by 14%, and PRN (as needed) and NPO (nothing by mouth) by 13% each. Female gender was associated with higher odds of correctly understanding NPO (odds ratio, 3.11; 95% confidence interval, 1.18-8.21; P = .02); older age was associated with higher odds of understanding PRN (odds ratio, 1.03; 95% confidence interval, 1.00-1.05; P = .04). Education level was not found to correlate significantly with successful explanation of any tested acronym. CONCLUSIONS: Medical acronyms are a predictable source of miscommunication. In this large cross-sectional study, none of the acronyms evaluated was understood correctly by more than one-third of adults. Clinicians should avoid using acronyms with patients and families to minimize confusion.

Accuracy in Patient Understanding of Common Medical Phrases.

Importance: Despite acknowledging that medical jargon should be avoided, health care practitioners frequently use it when communicating with patients. Objective: To characterize the understanding of common medical jargon terms by surveying a cross section of the general public and studying phrases that have established meanings in regular usage but different meanings in a medical context (eg, negative and positive test results). Design, Setting, and Participants: In this cross-sectional study, participants indicated their understanding of phrases that may have different meanings in medicine than in colloquial English via a mix of short answer and multiple choice questions. Several questions included paired phrases to assess for differences in understanding with or without jargon. Volunteers were recruited at the 2021 Minnesota State Fair near St Paul, Minnesota. An electronic survey was given to a volunteer sample of 215 adults (>18 years) who did not work or train to work in the medical field and spoke and read English. Exposures: Completing a written or verbal survey. Main Outcomes and Measures: The main outcome was an accurate understanding of the medical terminology. Free-text responses were coded by 2 researchers for comprehension. Secondary outcomes looked for associations between volunteer demographics and understanding. Results: The 215 respondents (135 [63%] female; mean [SD] age, 42 [17] years) demonstrated a varied ability to interpret medical jargon phrases. For example, most participants (207 [96%]) knew that negative cancer screening results meant they did not have cancer, but fewer participants (143 [79%]) knew that the phrase "your tumor is progressing" was bad news, or that positive lymph nodes meant the cancer had spread (170 [67%]). While most (171 [80%]) recognized that an unremarkable chest radiography was good news, only 44 participants (21%) correctly understood that a clinician saying their radiography was impressive was generally bad news. In each of the paired phrases comparing jargon vs nonjargon approaches, the nonjargon phrase was understood significantly better (P < .001). Conclusions and Relevance: These findings suggest that several common phrases are misunderstood when used in a medical setting, with the interpreted meaning frequently the exact opposite of what is intended.

What's in a name? Laypeople's understanding of medical roles and titles.

BACKGROUND: Physicians regularly use jargon in patient communication, which can lead to confusion and misunderstanding. OBJECTIVE: To assess the general public's understanding of names and roles of medical specialties and job seniority titles. DESIGNS: Volunteer participants completed an electronic survey, filling-in-the-blanks for 14 medical specialties (e.g., "pediatricians are doctors who take care of _____"), and ranked physician titles in order of experience (medical student, intern, senior resident, fellow, attending). SETTING: The 2021 Minnesota State Fair. PARTICIPANTS: Volunteers >18 years old without medical or nursing training. MAIN OUTCOME AND MEASURES: We summarized responses with descriptive statistics. Two researchers coded open-ended answers as correct, partially correct, or incorrect, with a third researcher for coding discrepancies. RESULTS: Two hundred and four participants completed the survey (55% female; mean age 43; 67% of respondents with a bachelor's degree or higher). Of 14 medical specialties listed on the survey, respondents most accurately identified dermatologists (94%) and cardiologists (93%). Six specialties were understood by less than half of the respondents: neonatologists (48%), pulmonologists (43%), hospitalists (31%), intensivists (29%), internists (21%), and nephrologists (20%). Twelve percent of participants correctly identified medical roles in rank order. Most participants (74%) correctly identified medical students as the least experienced. Senior residents were most often identified as the most experienced (44%), with just 27% of respondents correctly placing the attending there. We conclude that medical professionals should recognize that titles are a common source of misunderstanding among the general public and should describe their role when introducing themselves to minimize confusion.

Capturing critical data elements in Juvenile Idiopathic Arthritis: initiatives to improve data capture.

BACKGROUND: Documentation of critical data elements is a focus of the Pediatric Rheumatology Care and Outcomes Improvement Network to aid in clinical care and research for patients with juvenile idiopathic arthritis. We aimed to increase data capture for critical data elements and hypothesized that quality improvement methodology would improve data capture. We also hypothesized that data capture for all critical data elements would be lower for virtual visits compared to in-person visits. METHODS: All visits for patients with JIA between 9/14/2020 and 12/31/2021 at the University of Minnesota were included. We assessed completeness of critical data element capture. Sixteen interventions with providers were conducted, including email reminders, individual discussions, group meetings, and feedback reports. We used statistical process control charts to evaluate change over time. RESULTS: Baseline included 355 patient-visits: 221 (62%) in-person and 134 (38%) virtual with critical data elements entry ranging between 50 and 60%. Post-intervention included 1,596 patient-visits: 1,350 (85%) in-person and 246 (15%) virtual, with critical data elements entry reaching 91%. All providers improved data entry during this study. In-person visits had significantly higher data capture rates than virtual visits for all 4 critical data elements. CONCLUSION: We achieved our aim to increase critical data element documentation by focusing on provider buy-in, frequent reminders, and individualized feedback. We also found that collection of critical data elements occurred significantly less often with virtual visits than with in-person visits. Now that we improved capture of critical data elements, we can shift the focus to efforts aimed at improving outcomes for patients with juvenile arthritis.